As part of National Nurses Week, Minority Nurse is exploring the many paths nurses take to find a career where they feel like they are making an impact.

Irma Teune, BSN RN MSCN CCM is a bilingual clinical nurse educator with Horizon Pharma where she educates patients and families about chronic granulomatous disease (CGD), a rare primary immunodeficiency disease in which the body is especially susceptible to infections from bacteria and fungi.

As frightening as it is to learn you or a loved one has CGD, it can be even more difficult to understand when your primary language is different from that of your medical team. Teune’s ability to speak comfortably in Spanish and English means she can put her patients at ease while giving them the exact information and guidance they need to manage the disease.

Minority Nurse asked Teune some questions about her career path and how she is making a difference as a nurse.

1. How did you discover the field of nursing was right for you?

Like most people who pursue a nursing career, my primary passion is helping people living with chronic illness – and for me, my sister inspired this desire in me. When I was 27 years old, she was diagnosed with multiple sclerosis. It was an overwhelming time for our whole family – I received many questions from my family and her husband concerning her diagnosis and treatment since I was a registered nurse. The more I became involved with my sister’s health, the more I understood the perspective of family members of people with chronic diseases, and how the lives of caregivers are often just as impacted as the patients. I recognized the effect a caring, understanding nurse could have on patients, as well as their families, by playing that role within my own. I wanted to be part of that positive impact for patients and their families!

2. What led you to becoming a clinical nurse educator?

I first became a CNE for an MS therapy – because for me, it really was personal. I was very knowledgeable in MS diagnosis and treatment, so it was a natural fit for me to move into this role. After about six years, I was looking for a change and pursued an opportunity with Horizon Pharma. I’m now part of a support program for people who are prescribed Horizon’s therapy for chronic granulomatous disease (CGD), a primary immunodeficiency that only 20 children are diagnosed with in the U.S. each year.

For families impacted by this rare disease, it can be difficult to find a healthcare provider that is familiar with the disease, which only increases their fears. And their fears usually stem from not knowing what to expect next or how to manage the condition. That is why educating these patients and their families about CGD is so rewarding for me – it’s the first step to helping them become confident in handling any challenges that may come their way. I not only help patients manage their treatment plan, but also ease some of the burden that comes with being a caregiver. For example, my patients and their families can contact me with any issue—whether it is an insurance question, or a concern about the patient’s health, I will look into the matter and connect them with the right resources. I love it.

3. As our global community becomes increasingly smaller, many people may receive treatment in a place where they do not speak the primary language. How does that barrier impact everything from their ability to decipher a care plan to their hope for a good outcome? How is that magnified when the diagnosis is complex or a rare disease?

For any patient, it can be difficult to understand the complexities of their health and the healthcare system, as well as find the resources to support the best possible outcomes. These issues are further complicated when you are not a native speaker of the language of where you are being treated, as clinical details and context can get lost across multiple channels of communication. Language barriers also inhibit the trusting and positive relationship between the patient and provider that is so important for effective treatment.

For patients with a rare disease like CGD, because the affected community is so small, basic information is relatively limited – even in English. That’s why it’s so helpful for patients to have someone in their life who can talk knowledgeably about their disease in their language. Speaking to someone in his or her own language breaks down the walls that surround them and helps minimize the barriers they face in accessing and understanding their therapy. Even better – it provides them assurance and confidence that everything is going to be okay.

4. As a bilingual CNE, how do your experiences with patients help elevate the work you do? How does it help the patient and the families who are affected by diseases?

As a bilingual CNE, the obvious benefit is that I can communicate with Spanish-language patients in their native language. This helps ensure they are able to successfully adhere to their treatment plan. Additionally, I can help identify issues related to a patient’s or caregiver’s cultural needs. With the trust I’m able to build with my patients and families, they’re able to fully express questions or concerns, and I can ascertain their level of comfort and comprehension in managing their condition, avoiding further difficulties down the road.

Most importantly, I can be more effective in giving patients and families the reassurance they need. Imagine a patient or family member is worried about their treatment coverage or health, and hears, “Hola, como estas,” when they reach out for help. Or, when I give a patient the confirmation that everything is going to be okay, “Todo saldrá bien.” It’s these nuances that can make all the difference for a patient’s or caregiver’s treatment experience. And I love bringing this insight and experience to my broader CNE team. My colleagues and I work so closely that to be able to share the experiences of our bilingual patients feels like an honor.

5. What gives you the greatest joy as a nurse and what is your greatest challenge as a nurse?

As a Horizon CNE, I support my patients for as long as they are taking CGD medication, which for many, can be for life. Even when patients do feel confident with their treatment plan, or when children gain more independence, I am always available for help and to answer any questions. One of the most rewarding parts of my job is seeing a patient grow, and not just in their disease management. CNEs often play a role for every important milestone, from a child’s first day of school to teaching a college student how to inject their medication on their own. We get to know our patients on a more personal level, and are able to share in their accomplishments and joys as well.

Rare diseases can be difficult for even the most experienced doctors to diagnose. Likewise, with CGD, it can be confused with other inflammatory or infectious diseases, as they share many of the same symptoms (such as fever, tiredness, abdominal pain, weight loss, swollen lymph nodes, etc.) Unfortunately, by the time these patients are correctly diagnosed, they are often exhausted and scared. Sometimes patients and their families feel dismissed by the healthcare provider’s inexperience in CGD to be able to recognize the condition or its severity. As a result, when I reach out to a new family, they may be wary or tired of their journey and not being heard by the clinical community. As I only work with CGD patients, the condition is basically my whole life; I work hard to assure these families that I understand and can validate their struggles, and that I will help them in any way that they need me.

6. If others are thinking of a career as a CNE, what kinds of education, experience, and expectations might they have?

As a CNE, you need to be just as passionate about educating patients and their families as you are about listening to them. For most people living with a rare disease, the journey to diagnosis can be long, arduous and lonely. Some patients dive into research when they are diagnosed, and others take more time to process everything, so I always let them share what they are going through to determine how I can best educate them.

It’s important to allow patients to share their thoughts and feelings, and to hold their hand through the experience and acceptance of their condition. It’s this openness and transparency that is so critical to improving treatment outcomes, and helping patients get the most out of the services I can provide.

7. What will you reflect on during National Nurses Week?

This National Nurses Week, I will be reflecting on how rewarding it is to watch patients and caregivers develop from uncertain newcomers to advocates for the rare disease community. While I only work with the same 50 or so patients, I know that the impact I have on their families’ lives is far-reaching.

For example, I recently met with a young man who is preparing to go to college to teach him how to inject and responsibly take care of his medication, helping him gain more independence. Additionally, one of my newer patients is a six-month-old child. I met with the child’s grandparents and guardian, who were understandably very nervous and worried for the child’s well-being. Seeing them more positive and hopeful at the end of my education session reminded me again of why I love what I do. Reflecting on my patients’ successes and growth fills me with pride, and reminds me of my own accomplishments in my career.

 

Julia Quinn-Szcesuil

Julia Quinn-Szcesuil

Julia Quinn-Szcesuil is a freelance writer based in Bolton, Massachusetts.
Julia Quinn-Szcesuil

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